Terry
Crook and Laura live in Victoria, Australia. He was 62 when he was diagnosed in
August 2009. His initial PSA was 3.28 ng/ml, his Gleason Score was 7 and although
he was told he was staged T3b, this is clearly not his clinical staging which
appears to be T2a or T2b. He is undecided as to his choice of treatment. Here
is his story.
I (we) have just been diagnosed and are wading through our
options. We are at present in shock!!!
So far, we have seen a local urologist
and will be getting second and third opinions shortly from another urologist and
a radiation oncologist. Details regarding my situation as known at the moment
are as follows:
PSA=3.28
Gleason Score=7 (4+3)
Staging=T3b
Bone
scan negative
CT scan shows prostate enlarged with well defined planes and
no evidence of invasion into surrounding structures.
More to come after
we have seen the specialists and make the decision.
Later:
We
live in Ballarat and have spent the day in Melbourne about 100km down south. We
saw Prof Tony Costello in the Epworth Centre in his rooms and were very impressed.
He did a DRE (Digital Rectal Examination) and he reckons it is T2. Isn't amazing
how some things can make you feel good???? He also said that it was mainly left
side and that he hoped that he could spare the right side nerves. I hope so too!
I never really appreciated medical humor before!! The T3b diagnosis seems to me
to have been made before all the data was in (ie CT scan and bone scan) relying
only on the DRE.
He (Tony Costello) advised a Robotic Laparoscopic Prostatectomy
and follow up with Radiation. I believe this is the route we will eventually follow
but we are still to see the radiation oncologist next Tuesday
This is
a real crap situation to be in and I really feel for all those that have gone
before me My wife, my partner, is with me in all this and I feel her pain more
than I feel my own. I will update next week after radiation guy has had his two
bobs worth
Later:
Well, we saw the radiation oncologist
Tuesday October 6, 2009. I must say that we were terribly un-impressed. The fact
that she got the Gleason scores wrong and after doing a DRE herself launched off
into a nightmare scenario. She advised hormone treatment initially and then probably
5 weeks IMRT (Intensity Modulated Radiation Therapy) here in Ballarat : then off
to Melbourne for high dose brachytherapy over a few days. At this point my mind
shut down. I was very polite to her although I felt otherwise.
My god!
What a situation to be in! It is hard to believe that these specialists can make
decisions on peoples lives with such profound results without all the facts of
the case at hand. I suppose like many that have come before me, after doing all
the research and finding out all of the options; consulting with urologists and
radiation oncologists etc we have to make a decision.
In my case it isn't
quite as difficult as I first thought. Due to the aggressiveness of the cancer,
watchful waiting wasn't an option. Brachytherapy similarly was dismissed as the
staging T2 to T3 left too much doubt as to the long term outcome.
That
left really only two options as far as I am concerned :- Surgery or Radiation.
I am of the mind personally that given the two options I would choose surgery.
My
reasons are that I would know for certain how far the cancer had spread and just
how aggressive it was after pathology tests on the removed prostate. I would also
have options of radiation in the future if my PSA showed signs of rising. I think
the side effects of radiation are maybe ?? not quite as bad, (at least initially)
as surgery, but the peace of mind of knowing that the cancer is removed is every
bit as valuable.
It has came as quite a surprise to me to find out just
how much I always believed that specialists in their field really knew what they
were doing. I have found it quite otherwise to be the case. I think they all really
believe they know it all and that we should just do as we are advised and to question
their judgement is tantamount to sacrilege. Even to request a second opinion is
seen as almost a slur on their competence.
Anyway!! To come to a conclusion.
I have decided on Robotic Laparoscopic Surgery. This is to be followed up with
radiation. I don't have the exact details as yet but the operation is scheduled
for early December.
In all this I just hope that others have support of
their partner as I have. I have been told in no uncertain terms that "we" have
prostate cancer and that "we" had just better get on and fix it!!
March
11th 2010. Had the operation on 1st December at the Epworth (Richmond, Melbourne).
Went in on the morning of the operation and stayed overnight. The next morning
they let me out and we went back to the hotel for another night before returning
home to Ballarat. This is where the recovery begins!
The
pathology report on the removed prostate was as follows:
The
conclusion: Robotic radical prostatectomy bilateral adenocarcinoma Gleason pattens
4+5=9 (Cribriform). Multiple foci of predominantly perineural extraprostatic extension,
right apex (2mm), left apex (10mm) left bladder neck (6mm) right posterior (13mm)
and left posterior (20x3mm). Seminal vesicles and pathological margins clear.
Vascular invasion noted, pT3a.
This
was worse than we had hoped but it proved that the prostatectomy was the best
option as with radiation, we would not have known the extent. And as Professor
Tony Costello said, the best place for it was in the bucket!
We
saw the surgeon a month later for a check-up and then again recently for three
month check. I had had the first PSA which was 0.04 which was a relief to us both.
No radiation is planned at this stage or until PSA is 1.00 [Surely
IF the PSA reaches 1.0 ng/ml?] .
As
far as post operative after effects are concerned, I had urethral and perineal
pain for quite a while and was on anti-inflammatories for some weeks but this
is now completely gone. Incontinence lasted for five weeks and then improved dramatically.
Currently just using one pad a day which is "just in case". Still get caught if
I sneeze!
The
ED is an issue which we are currently working on. The pills do not seem to work
except for a "glimmer" so we are about to embark on the injections which we hope
will work! I am now back at work full time with a different view of the world
and I didn't know that there were quite so many butterflies and roses!
As
far as our choice of surgeon is concerned, we know that we made the right choice.
Now we wait and see, but in the meantime am having pomegranate juice daily, Resveratrol,
green tea and anything else that she can find for me! !
Terry's e-mail
address is: tlc@netconnect.com.au
